High-Dose Methotrexate -- DONE!

Lilly just finished her 4th and last round of high-dose methotrexate and I am SO GLAD! Each time she gets a fever after she clears her methotrexate, and each time it gets worse and worse. We are happy to get this phase out of the way!

The first few days are fine. She feels good and is happy! Mitch was our nurse the first day and Lilly had lots of fun with him. Fun nurses are the best! I love to watch the nurses interact with Lilly. They come in and almost always comment on her cute leggings and Lilly immediately starts talking about her best friend Michalla. Lilly started wearing leggings because of Michalla. Lilly tells them that Michalla helped her when she was sad about losing her hair and that Michalla always painted her nails. Then Lilly proceeds to tell them that Michalla is in heaven now, but that she's still watching over her. Almost all of our nurses have been touched by Michalla in some way. She is an amazing girl and I'm so glad our family had the privilege of knowing her. She is our angel now and not a day goes by that Lilly doesn't talk about her. We love you Michalla! Thank you for watching over our Lilly!

We try and stay busy any way we can. 

Puzzles, nail painting, movies, whatever.

Lilly and Grady (another cancer kiddo) were diagnosed with Leukemia one day apart. And we also found out they have the same pediatrician. Small world! They had fun hanging out. Grady even let Lilly paint his nails a "manly" green color. And they created a band together when Music Therapy came. Fun times! It's also nice to have a cancer mom to hang with too. Carrie is so fun and I was glad she was our neighbor for a few days - it's nice for mom's to have friends while in the hospital too! :)

Grady's sisters - Parker and Maizy   

Lilly couldn't wait until they came each day to the hospital to visit, because that meant more friends to play with!

We LOVE Susan the Art Lady! She comes and hangs out with us and shows us some pretty cool crafts. This time Lilly and her spray-painted pillowcases, made stickers, and made some special necklaces. She is so great!

Like I said, we have fun the first three and a half days. It's like the chemo isn't even bothering her...

And then the fevers start... Her fever got up to 104.8. They gave her Tylenol and started her on two different antibiotics - Cefepime and Vancomycin. She had a reaction to the Vancomycin called Red Man's Syndrome. It's hard to tell in this picture, but she's as red as an Indian. Her head burned and itched like crazy and her fever wouldn't break even though they gave her Tylenol. She had a constant fever for over 8 hours. She was miserable. They wanted to give her another dose of the Vancomycin, but just slow down the flow and give it to her over two hours instead of 30 minutes. I didn't feel good about it. My "mom instincts" told me she needed something else. So, I protested. I asked if there was another antibiotic they could give her instead. I felt very strongly that the antibiotic she was reacting to was also preventing her fever from going down. The nurse told me they had to give her an antibiotic because her fever was so high and they were worried about a possible infection. I told her that was fine, as long as it was a something different. They got it approved to change medications and as soon as she got the new antibiotic, her fever began to slowly come down. It spiked a few times over the next 24 hours, but it never got that worse again. Lilly was afraid she was going to have another horrible night, so she asked to stay one more night. You know your cancer kiddo doesn't feel good when they ask to stay in the hospital when they are normally counting down the minutes until they can get out of there. We had no more complications and were able to come home yesterday. But, Lilly has a lot of recovering to do. Her ANC went from 1700 to 200 in less than 48 hours because of that awful high fever. We have to be very careful about germs and hope she doesn't get another fever anytime soon, or we have to go back to the hospital. But, we are grateful we have another phase done and out of the way. Lilly is so brave and she is kicking cancer's butt! We just have to take it a day at a time and we are grateful for all the love and prayers that continue to come our way.